Have you seen people posting their kisses on social media and tagging @BisousForLeo? I not only saw them, but kept seeing them—from Gal Gadot to Eva Longoria, Zoe Saldana, Chelsea Handler, and a ton of others. I became fascinated. What could get all of these people to post in support of something that I had never heard of?
I went to the Instagram page and then to BisousForLeo.org. I not only immediately understood why everyone was supporting this cause, but also wanted to join in the mission myself. The below interview with Léo’s mother, Deborah Vauclare, will show you why Bisous For Léo is something that you too will want to get behind.
Courtesy of Deborah Vauclare
Courtesy of Deborah Vauclare
Can you explain why you started Bisous For Léo?
“I wish the circumstances were better, but my husband, Antoine, and I started Bisous For Léo last summer when our son Léo was diagnosed with infantile neuroaxonal dystrophy (INAD), or in layman’s terms, a cross between Alzheimer’s and Parkinson’s for kids.”
I’ve never heard of such a disease before. Can you tell us about it?
“We hadn’t heard of it either. In fact, it’s not part of the standard pregnancy panels, so even though I went through all of the ‘regular’ tests when pregnant, this wasn’t included and I didn’t know enough to ask for it at the time. That said, we didn’t find out anything was amiss until Léo was about 18 months. He started to walk, started to talk, and hit all of the other expected developmental milestones. It wasn’t until he started to lose his acquired skills that we grew concerned. We put him in therapy, after the suggestion of friends—physical therapy, occupational therapy, and speech therapy. Nothing was working and his decline was rapid. When one of the therapists suggested turning to a geneticist, we did just that and were stunned to receive the diagnosis.”
What is the diagnosis exactly?
“INAD is an extremely rare, inherited degenerative disorder of the nervous system. It starts early in life and progresses rapidly. It usually develops between six months and three years of age. Children affected will lose all acquired skills, including mental and cognitive abilities, as seen in Alzheimer’s, and physical abilities, as seen in Parkinson’s, resulting in death likely before they reach their 10th birthday.”
I can’t begin to imagine how you and your husband felt and continue to feel. No parent should ever go through this.
“We were stunned at first, then angry and distraught. We’ve been through every emotion, but once we got out of the initial haze of disbelief, we agreed immediately that we needed to take action. We are people of faith and knew deep down that there must be some greater purpose to this diagnosis, and there is.”
Is that where Bisous For Léo came from?
“Exactly. Our first thought was that we wanted to kiss this and make it better, not only for Léo but for all the children affected with INAD. Since my husband is French, we chose the word ‘bisous,’ or ‘kisses,’ to relay our intention.”
Courtesy of Deborah Vauclare
Courtesy of Deborah Vauclare
The diagnosis is horrible. There’s no getting around that, but can you discuss the “big picture” as to why the disease is so important?
“There have been numerous studies that address the link between INAD (PLA2G6 mutation) and Alzheimer’s disease, Parkinson’s disease, and Lewy body disease. Finding a cure for the infant forms of the diseases could lead the way to finding better treatments and ultimately a cure for the adult versions, as the children don’t have the same environmental factors at play as the adults who are affected.”
This is exactly why studying INAD is so important. Is it true that only a couple of hundred children are affected?
“Yes, it is true and that’s why it’s been lumped into the rare disease category for so long. Yes, it’s rare, but it’s also so important when you pull back and look at how these children could help with treatment and cure options for the millions of adults worldwide who are suffering from Parkinson’s and Alzheimer’s. INAD is the missing puzzle piece, so to say.”
What are your immediate needs?
“They’re two-fold. First, to draw awareness for the disease, which we are doing with social media. The more people who post their kisses in support and tag @BisousForLeo, the greater chance at preventing any more children from getting this disease. We are incredibly grateful to everyone who has supported us thus far. The campaign has grown beyond our wildest expectations and we are hopeful that it will continue to grow.
And second, we need an initial $500,000 to fund Dr. Paul T. Kotzbauer’s research and development in gene therapy. The professor, in the neurology department at Washington University School of Medicine in Saint Louis, is focused on understanding disease mechanisms and developing improved diagnostic and therapeutic approaches in Parkinson’s disease and in the hereditary neurological disorder NBIA (neurodegeneration with brain iron accumulation), under which INAD falls. He also works closely with Michael J. Fox and his foundation.”
So this is very much a work in progress?
“Yes, and will continue to be. But with everyone’s continued help, we can hopefully not only kiss INAD goodbye, but Parkinson’s and Alzheimer’s too. Together we can do this.”
Is there anything else you want people to know?
“Even if you are a carrier for INAD, you can still have a healthy child, but you must know upfront that you’re a carrier in order to take the necessary steps. The only way to know is to get tested. INAD is autosomal recessive, meaning that both my husband and I are carriers of the mutation and didn’t know it. In a standard pregnancy, there is a 25% chance that carrier parents will pass on their recessive PLA2G6 gene and have a child with INAD, a 50% chance that the child will be a carrier like his/her parents but not have INAD, and a 25% chance that the child will neither be a carrier nor have INAD. To that point, when we received Léo’s diagnosis, I was seven months pregnant with my daughter, Éva, and she does not have INAD. We know this because we had her tested immediately. If both parents know they are carriers, then IVF is an alternative to ensure that the child will not have INAD.”
Thank you, Deborah, so many bisous to you and your family. For more information or to make a donation, please visit BisousForLeo.org.
Editor’s note: the photo of Nicky Hilton, Kathy Hilton’s daughter, is from the @BisousForLeo social media campaign.
